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Imagine: Engagement and communication key in Alzheimer’s treatment

MaryLynn Schiavi, Correspondent
Published 12:30 p.m. ET June 4, 2017

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Do you know about the early warning signs of Alzheimer's disease? Find out in this short video courtesy of Alzheimer's NJ.

Kenneth C. Zaentz (left) is President and CEO of Alzheimer’s NJ, an organization established in 1985, to help patients with Alzheimer’s and their families through a variety of resources such as: support groups, community and care giver education programs, and a respite care and wellness program that teaches care givers about the value of getting a break for themselves. Dr. Hillel Grossman, M.D., was the keynote speaker at an education and research conference hosted by Alzheimer’s NJ in late April in Somerset. The event, New Directions in Research and Care, is a dementia-specific education program for healthcare professionals in New Jersey.(Photo: MaryLynn Schiavi/Correspondent)

Innovation can rear up in the most unlikely places and in the most unexpected ways —and sometimes, the most innovative approach involves simple and accessible steps, which is what some experts in the field of Alzheimer’s research advocate today.

Discovered 109 years ago, Alzheimer’s, is an irreversible, progressive brain disease that slowly destroys memory and thinking skills. Generally it is diagnosed after the age of 60. At this time there is no cure, although there are 600 compounds in clinical trials today. New pharmaceutical development can take 10 to 15 years and cost more than $800 million.

The current thinking for treating and caring for those with Alzheimer’s involves small incremental changes and an emphasis on continued communication.

Incremental changes could include installing safety features within the home or making adjustments to the individual’s clothing to make them more comfortable.

As noted in the January 23, 2017 issue of The New Yorker, in an article titled: The Heroism of Incremental Care, author Atul Gawande writes, “We devote vast resources to intensive, one-off procedures, while starving the kind of steady, intimate care that often helps people more.”

Keeping connected

The most powerful treatment available today may be as simple as retaining connections with family, friends and community, according to Dr. Hillel Grossman, M.D., Director of the Clinical Core of the Alzheimer’s Disease Research Center, Mount Sinai Medical Center, Associate Professor, Psychiatry, Icahn School of Medicine at Mount Sinai, and Director of Geriatric Psychiatry, James J. Peters Veterans’ Affairs Medical Center, New York.

Grossman was the keynote speaker at an education and research conference hosted by Alzheimer’s NJ in late April in Somerset. The event, New Directions in Research and Care, is a dementia-specific education program for healthcare professionals in New Jersey.

Grossman said interest in the condition was limited to the past few decades largely because it was assumed to be an inevitable repercussion of growing old. He said while the disease is more likely to be diagnosed over the age of 60, it is not to be confused with simple dementia — which is really the umbrella term that refers to more than 100 types of conditions that affect memory and cognitive skills.

He said, in either case, we must learn to accept changes in our memory and thinking abilities, as we accept other changes in our bodies as we age and celebrate the things that are preserved.

Grossman said there is a common misconception when someone is diagnosed with Alzheimer’s — they often believe that something has fundamentally changed at that moment.

“They think, 'Yesterday I was myself, today I am something else.' I say to them, 'Your personhood has not changed. Your ‘self’ has not changed. You are you,' ” Grossman said.

While someone with Alzheimer’s may need to write things down more often or have someone remind them about appointments, who they are has not fundamentally changed.

“Your personhood is intact and you need to use it, and you need to continue to develop it. You need to engage with life, rather than withdraw,” said Grossman, adding that research shows that loneliness increases the risk for developing Alzheimer’s disease.

Kenneth C. Zaentz is president and CEO of Alzheimer’s NJ, an organization established in 1985, to help patients with Alzheimer’s and their families through a variety of resources. These include: support groups, community and caregiver education programs, respite care and wellness program that teach caregivers about the value of getting a break for themselves, and a program called Clinical Trials Connection that provides information about current clinical trials.

“We know that when someone is diagnosed with the disease, we want them to stay socially active because it can be a very isolating disease," Zaentz said. "Some research is showing that loneliness can be a factor in Alzheimer's disease.”

Looking back

Kristin Davie, a resident of Hoboken and former resident of Colonia, wishes she had known about the importance of continued contact with friends, family and the community when her mother was diagnosed at the age of 60.

“The natural inclination is to close ranks and that is what my family did. We kept it within our immediate family for a long time,” the Colonia resident said.

She regrets not keeping her mother more connected because the world of the individual diagnosed with Alzheimer’s can become smaller and smaller.

Davie said once they began to tell others beyond the immediate family, they were pleasantly surprised to find out how caring people can be. And they also found that there were some who did not know how to deal with the prognosis.

“There is a stigma to the disease and a general lack of understanding," she said. "It’s not just a disease where you tend to be forgetful, eventually your body will forget how to swallow."

Davie and her family were helped by Alzheimer’s NJ when they were seeking home health aides.

“Before I worked with Alzheimer’s NJ, my brother and I didn’t know where to turn. You can so easily become overwhelmed by all of the information,” she said.

Davie said when she contacted Alzheimer’s NJ, she received thorough and caring help and was given a list of home health aides in Middlesex County. They have since contracted with someone who helps out with her mother’s care three days each week for five hours a day.

She is grateful that there is a resource that can offer guidance and support.

“It’s so easy to feel that you are the only one going through this and dealing with these challenges," she added. "It’s just great to have someone to reach out to who understands what you’re going through — just someone to talk to.”